By bobb | Sun, 3/12/2023 - 08:36
Angela Shanahan portrait

Angela Shanahan

Here is a statistic that should make anyone sit up and take notice. Twelve per cent of all boys aged five to seven across Australia are now on the National Disability Insurance Scheme. That is not a percentage of NDIS participants; that is 12 per cent of all the little boys in this country. Curiously, the number of young girls aged 5 to 7 on the NDIS is only 5 per cent of the national total. So, what is wrong with the boys? It is no exaggeration to say that this statistic seems tantamount to a national emergency. Or is it?

A lot of people are now asking the same question. As the mother of nine children, six of whom are boys, I have asked this question myself. Some time ago I wrote that the principal problem with the NDIS will be the definition of disability. Many analysts feared that a lack of precision in the definition of disability might cause the scheme to blow out in ways that were never envisaged when a comprehensive tiered scheme for the disabled was first mooted. They were right. It now costs more than Medicare.

The massive blowout in the cost of the NDIS, along with the disproportionate number of boys on the scheme, is caused by a huge increase in diagnosis of early developmental delay and psychosocial disorders. Developmental delay in very young boys is not uncommon. They often lag behind girls, especially in speech. However, because we start both boys and girls at school aged 5, the delay in boys’ speech and other areas like fine motor skills, is often more obvious – especially when compared with girls. So, whether boys’ developmental problems are more obvious comparative to girls is a good question. Nevertheless, developmental issues are picked up as they begin school in the age group 5 to 7.

Many of these boys will grow out of their relatively minor problems which often manifest in difficult behaviour. But the real driver of the increase in numbers of children on the NDIS is diagnosis of psycho-social disorders, specifically autism spectrum disorders.

One of the biggest problems with diagnosis of ASD is the understanding of “the spectrum”.

Psychiatrist Dr Tanveer Ahmed says he’s interested in seeing how the government will try to claw back the broad autism label, as data shows 12 per cent of boys aged between five and seven are on the NDIS. “We’ve basically… turbocharged a sort of neurodiversity movement and these More

There has been steady growth in diagnosis of children with ASD and Asperger’s Disorder. However, specific to the NDIS there are three related questions. First, is ASD over diagnosed? Second, how truly disabling is ASD in children? Third, can we afford to define low-level ASD and Asperger’s as a disability, because the NDIS was originally envisaged as a support network for the profoundly disabled?

There is an emerging school of thought among psychologists and psychiatrists in the US and UK that the autism spectrum is much narrower than the current level of diagnosis warrants. Enrico Gnaulati, a clinical psychologist and the author of Back to Normal: Why Ordinary Childhood Behaviour Is Mistaken for ADHD, Bipolar Disorder and Autism Spectrum Disorder, has criticised the medicalisation of relatively normal “bad” behaviour, particularly in boys. He has questioned many of the basis for diagnosis of ASD, pointing out that the push to diagnose children with some sort of developmental disease is often based on a misunderstanding of the different rates of development in boys and girls, who are, after all, different. Hence the rate of ASD in boys is higher than girls. Gnaulati doesn’t deny the existence of a spectrum but he does think over-diagnosis of ASD is a real problem.

However, severe autism is truly disabling and the needs are quite different from those of people diagnosed with Asperger’s disorder and milder forms of autism. The National Council on Severe Autism in the US states the spectrum theory is deficient: “The broadening of the construct of autism in the form of the Diagnostic and Statistical Manual criteria for Autism Spectrum Disorder in 2013 has had the effect of rendering the diagnosis essentially meaningless, as it allows for the same diagnosis to be given to wholly disparate individuals”. So instead of parents looking to the disability route, perhaps children are suffering from more emotional problems with parents who might be psychologically distressed. Teachers need to look at what is going on in classrooms.

We can’t continue to dress up mild psycho-social problems as disability. Even Lorna Wing, the psychiatrist who introduced “Asperger’s Syndrome” into the medical lexicon, said this was something she regretted, as she wanted to “move to the dimensional approach – labels don’t mean anything, because you get such a wide variety of profiles.” Labels are one of the biggest obstacles to fully understanding neurodiversity, especially in so-called “high functioning” people whose problems are not particularly disabling. The removal of low-level autism spectrum disorder in children from the NDIS seems ­obvious, because the scheme was never intended to cover such children. Children with non-global disorders, developmental delay or mild autism should not be able to access the NDIS. The money needs to go to children and adults with severe disabling conditions.

But if children are removed from the disability budgets, then education and medical budgets need to be reassessed. NDIS Minister Bill Shorten said rightly that eligibility for the scheme needed to be clearer and should be “less about being able to secure a particular diagnosis than on the person’s individual needs and ­capacity” – which might entail means testing. Shorten also rightly supports more early intervention support for children outside the NDIS so it is not the only option.

“I think we need to have clarity around entry (to the NDIS),” he said. “The conversation must shift away from ‘in or out’ of the NDIS, which has been the only lifeboat in the ocean for people needing support for too long.”